If I had to list in order the tough choices Jason and I have made to date for Zoe’s success and/or health, there is one definite number one toughest choice of all in my mind. Like, nothing even compares to this decision, decision. There are the super scary medical decisions you make when you have no other choices and your kid has to go on life support or she won’t live another minute decisions: ECMO, Central line placement for PH purposes, in a way those are no brainers, there is no alternative. But then there are the decisions you make that could make your currently stable yet still medically fragile child either way worse and reverse all the years of progress or make it could make it so much better, these are the gut wrenching ones where the only thing you can do is talk A LOT about it, trust your parental instinct and pray to whatever power you believe in that you are making the right decision. This was one of the latter.
Don’t tell CPS, but just over eight Father’s Days ago we basically starved our kid for two weeks to attempt to get her to eat orally. Yes, you read that right, we pretty much stopped feeding Zoe for almost two weeks so she would know what hunger was and would hopefully learn to conquer her psychological fears of food and also actually learn the mechanics of HOW to eat. And you know what, it worked!
Here’s the short version of how that all went down. Zoe had been tube fed for almost the first two years of her life. Due to her congenital diaphragmatic hernia and Pulmonary Hypertension she had never had the physical stamina to breast or bottle feed when she was a baby, her tiny lungs just didn’t allot for that. I instead pumped religiously for 9 months, 6 times a day and then would tube feed her that milk through the G- tube in her stomach. We tried over and over to help her earn to drink, but she would continually fail her swallow tests and eventually we were told by one of her docs that we needed to stop trying to teach her to eat, that it was ultimately too dangerous for her. I was devastated about this because I spent all day every day working on helping Zoe overcome her food aversion. We hadn’t gotten very far, but still it was a start. A year went by and we had basically given up on Zoe ever eating by herself. We did feeding therapy, speech therapy, attached tubes with breast milk to a pacifier, played with food, did art projects with pudding, etc., all just to try to get Zoe to the point where she could even stand to be around food. NOTHING worked.
What didn’t help in this process was that she threw up LITERALLY every time she was tube fed. Her feeds were carefully calculated in terms of calories and quantity. Whatever she threw up, I had to give her that amount again. It was ruthless and relentless. She was miserable about it and so were we. It felt hopeless and left us all living on edge. And then, like often happens to me, a serendipitous moment occurred. To this day, I don’t know what search words I googled one desperate puke soaked afternoon, but up popped a blog that told the true story of a toddler boy (who just happened to live in the same city as we did) who was also tube fed (different medical issues), had never eaten orally, who in 2 weeks had gone from entirely tube fed to being entirely an oral eater! Shut the front door, what was this magic process?
I became obsessed. I got a hold of this mama and asked her a million rambling questions. The short version is that it was called a Rapid Tube Wean. It is pioneered by a German Psychologist named Markus Wilken, and the theory is that tube fed kids aren’t interested in eating because they have no idea what hunger is; also, they are continually nauseous because they never have an empty stomach from tube feeds. The method is that over the course of a week you drastically reduce your child tube feeds by up to 80%. You also try and schedule that one feed during the evening so that the child isn’t aware of it. Over the course of that week they ideally grow hungry and start becoming curious about food, and also desperate enough for nourishment that they learn to conquer their food aversions. Over that week you also spend HOURS each day playing and interacting with food in a non-threatening manner. You NEVER push food on the child. You also try and have them around other children who both are and are not oral eaters and organize what are basically play picnics, a chance to interact with food in a non-threatening manner and not related to a meal. You eat with your mouth open, you exaggerate everything so they can see the actual process that happens when food enters your mouth. And you NEVER ever show emotions, good or bad. Sounds easy right? Ha!
I did my research, I watched a video of Dr. Wilken speaking at Seattle Childrens Hospital about this process, I talked to other two moms in Seattle who had done this and I met their kids, I talked to Zoe’s speech therapist, her cardiologist and her pediatrician. I talked non stop about this to Jason and pretty easily convinced him that this was the only way we were ever going to get Zoe to eat. He’s amazing and totally trusts my medical/ maternal instincts when it comes to Zoe and he was on board immediately. Besides, we had nothing to lose, well, except for every hard fought ounce we had gotten on Zoe in the past 2 years.
We met with the feeding therapists at Seattle Childrens and with the input of her cardiologist, came up with a plan. Over the course of 5 days we would cut her food intake by 75%. She still needed to get fluids in order to help her heart compensate and function its best, but we would try to give her those fluids when she was sleeping or not paying attention. We were told she could lose up to 10% of her body weight, 2.5 pounds at that point. We were told we had had 12 days to make this work and if it didn’t we needed to resume complete tube feeds immediately. We were also told to check in with her pediatrician every day to make sure she was physically ok (or as ok as you can be when you aren’t getting food). We were told we could do this at home instead of in clinic,as some weans were done, as the success rate of the home weans seemed to be higher. I also think we had proved to the medical staff that we were uber responsible parents who didn’t make uninformed choices, we knew what to look for when things weren’t right. We are also extremely blessed to have a cardiologist and hospital who are incredibly inclusive and team players when it comes to new procedures, they definitely take into account parent wishes and current research.
So… there was no turning back . On June 10, 2010 we started reducing Zoe’s feeds. For the first 5-6 days nothing was really noticeable. It was kind of remarkable really, she didn’t seem bothered by the no food thing. We went to Portland for the weekend and then a birthday party. She touched a cupcake, but didn’t try any. And then it was the work week again. Zoe and I would start each day with me eating breakfast in front of her, with my mouth open, chewing really slowly and exaggerating every movement. We played with food on a blanket on the floor, trucks hauled cheerios, gummy worms became jewelry. We had veggie straws, sunflower butter, Nutella ( a personal successful favorite of Dr. Wilken), black olives, all the things that were easy for her to hold on to and wouldn’t slip down her throat too easily and catch her off guard. Zoe slowly dropped weight, 6 ounces, 10 ounces, 1 pound, etc. Day 6 she put a drop of guacamole to her lips and touched it with her tongue. Day 7 she started to get real fussy, she was not happy but she still had no idea why. We watched her get more and more unhappy and blotchy and turn into a train wreck. And yet we stuck with it and tried not to panic, Jason and I would talk each other out of the “what are we doing” moments. Day 8 I was carrying her around our studio because she was so irritated by this point I couldn’t put her down, I had just taken a bite of pizza and was chewing slowly with my mouth open. Zoe suddenly put her hand on my mouth and opened my jaw and reached in my mouth took out the half chewed food, looked at it in her hand and then placed it back in my mouth, closed my mouth and moved my jaw up and down, before opening my mouth again to see if the food was still there. It was an incredible moment. She was totally processing exactly what happened to the food and what she was supposed to do when food entered her mouth. It’s a crazy thing to think about since for 99% of society, we just do that naturally, but she had ZERO idea what to do with food. It was just a foreign, scary substance to her that did nothing except wreak havoc on her body. The next few days, she would touch foods, lick some ice-cream, suck on a veggie straw, but nothing of substance and certainly nothing that amounted to caloric intake.
Day 12 was Father’s Day 2010. Zoe had lost 2.5 pounds and was skinny, snotty, blotchy and a total mess. We had bailed out of all Father’s day activities because we were broken and beyond sad. I had been so convinced this would work and had convinced everyone else to go along with me and it hadn’t worked. Zoe had lost SO much weight, it would take forever to get it back on her. I had caused her so much trauma and for what? Jason and I barely spoke that day because we didn’t know what to say to each other. That afternoon he headed to his parents for a bit after we had figured out what to tell the docs when I called them the following morning. Zoe was down for a nap, she was exhausted and weak. She soon woke crying and I went to pick her up and carry her to the living room floor where the play picnic makings were all laid out. I tried not to cry. I turned back to the fridge to grab a beverage and when I looked back at Zoe she was putting a cheerio in her mouth…and then another and then another. She slowly mulled at it with her tongue and then hesitantly swallowed it down, She choked and gagged a bit and then picked up another one and put it in her mouth. I stared in shock as she sat there for over an hour slowly shoveling cheerios in her mouth and swallowing them down. I did what I was told to do and didn’t freak out, I stayed behind our kitchen counter and watched from afar. I didn’t congratulate her, I didn’t shriek with happiness, I just stared at her in awe. She had done it, she had conquered her fear and figured out what this hunger thing was. I called Jason and in a whisper told him what was happening. He obviously got much more excited than I was letting myself get. We’re good like that, we never freak out at the same time.
Over the next several weeks Zoe added some foods to her diet; beef pho and eggrolls, Nana’s delish blackberry pie (she is half Strom you know), tacos, quesadilla, tater tots, ice cream, basically anything but yogurt (as it should be, that sh#@ is gross). It was a SLOW process to be sure but she did it. She ate a few bites more every day and tried a few different foods. After several months Zoe was eating enough that we were able to discontinue her nightly tube feeds entirely. She continued to get liquid fluids at night for many, many months. A year later I permanently popped out the G-tube, taped over that stoma and we celebrated with champagne from Zoe’s speech therapist.
Now Zoe is something of a foodie, she loves baking and cooking with us and will try just about anything, She reads and executes recipes on her own and bakes pink princess cakes for Bapa’s 70th birthday. She helps Jason flip hot dogs on the BBQ and slices mushrooms for the kabobs and laughs about how cutting onions makes me cry. She guts and fillets trout she won’t eat, she spends hours in the greenhouse and garden with Jason planting foods to eat later in the summer. I still sometimes can’t believe how much our lives changed in this single Father’s Day afternoon. And I still try not to think about how I would ever made peace with myself if that rapid wean didn’t work, I don’t know that I ever would have.
So to my partner in vomit, med mixing, and crazy-scary decision making, my husband who has emotions so I don’t have to, my husband who never bats a eye when I suggest we do something to help Zoe no matter how out-there it sounds, my husband who is a total team player and participant in Zoe’s life…Happiest of Father’s Day. I know today is supposed to be about you, but really it will always be about cheerios and that life changing day in our world; the day the vomit ended and the cooking single meals for a toddler began. Because you know what? All those pre-natal rules you make about “my kid is going to eat what we eat or they won’t eat at all” crap; Yeah, those are meaningless when your kid was tube fed for 2 years. Sometimes ice cream is a totally legit food for three meals a day. Because you know what, calories are calories when it comes to Zoe!
Zoe and I love you bunches and you and I are a great team, even when we’re not. I wouldn’t want to walk this crazy life with anyone other than you, I mean, I’d have to do yard work if you weren’t around!
Happy Pop’s Day, Babe.
P.S. My sister who proof reads my blog posts for me is on vacation so please ignore typos until she gets back online…
Disclaimer: This story and these methods are what worked for our family and situation. Please do your research and consult your child’s doctors before taking any of these steps.